Having received a questionnaire from us or browsing through this website, you might ask yourself one or several of the following questions:
By completing the questionnaire that you received, you provide important information on the health and quality of life of former childhood cancer patients.
This information is essential for achieving improvements in cancer therapies, follow-up care, and policy interventions.
Yes, your participation is still valuable. For us, it is important to know how all former patients are doing nowadays. This helps us assess the need for improved cancer therapies, follow-up care, and policy interventions.
That is why we ask you to fill in the questionnaire also if you do not face any health problems or other limitations in your everyday life.
Certain criteria must be fulfilled for you to be able to join. You must have been diagnosed with cancer before the age of 20 years in Switzerland. Furthermore, at least 5 years must have passed since your cancer diagnosis.
We draw on the Childhood Cancer Registry to identify all those eligible for study participation. If you think that you should be part of the study, please send an email to sccss.ispm@unibe.ch or use the contact form to contact us.
Having a child with cancer in the family can also be challenging for the siblings. Likewise, we are interested in the siblings’ health and their quality of life. Comparing health information of childhood cancer survivors with their siblings helps us to identify late effects that are specific to childhood cancer and its treatment.
Unfortunately, we cannot pay for your participation. Our work is solely funded by non-profit organizations and not by commercial sources.
We greatly appreciate your contribution to the study! Your participation plays an important role in helping improve treatment, aftercare, and quality of life of future generations of childhood cancer patients and survivors. To give back, we are committed to keeping you informed by sharing study results on our website, LinkedIn, and through our newsletter.
Late effects of childhood cancer and its treatment may affect many aspects of life and we want to obtain an extensive picture. Therefore, the questionnaire is quite comprehensive.
These are important aspects of all our lives. We want to find out whether former childhood cancer patients face any challenges or might require additional support in these aspects.
We would like to examine how late effects differ among people with various living circumstances such as education, work and income.
We fully understand that there are questions that you cannot or do not want to answer. If you decide to skip a question, e.g. because it is too intimate or you cannot remember, please continue with the next one that you feel comfortable answering.
Late effects of childhood cancer and its treatment may occur many years after the initial diagnosis. They may also worsen or disappear. Learning more about when late effects occur and how they change over the life course is thus important for improving therapies, follow-up care, and policy interventions. For this reason, we send out a follow-up questionnaire a few years after the first questionnaire.
| In processing, storing, and analysing the information, we strictly follow Swiss legal regulations and data protection laws. Your responses are entered into a database set-up specifically for that purpose. Your name and address are kept seperate in another database reserved for administrative purposes. Both databases fulfil high safety standards. Access to them is restricted to the SCCSS team. Provided that they fulfil strict requirements, the SCCSS team may provide researchers with selected, anonymized data needed to answer specific research questions. As a result, researchers do not know which individuals contributed information to the SCCSS. Research findings – irrespective of where and how they are communicated – can never be traced to the individuals who contributed the data. |
Moreover, everybody involved in processing, storing, or analysing information signs an agreement to maintain confidentiality on all information accessible to them.
Do you have other questions? Please do not hesitate to contact us!